Let me give it to you straight. I don’t celebrate World Parkinson’s Day. I don’t celebrate World Parkinson’s Month. I don’t participate in discussions on whether it’s Parkinson’s or Parkinson. I will lose no sleep over the decision to drop the word “disease” from its name. I don’t care whether we call ourselves Parkies, people with Parkinson’s (PWP) or people living with Parkinson’s (PLWP). And I certainly don’t make a point of marking my Parkiversary, the anniversary of my formal diagnosis, and surely the most ridiculous of causes for any kind of celebration.
I don’t think there is very much about this condition worth celebrating. World Parkinson’s Day on 11 April, is the anniversary of James Parkinson’s birth. And every year we stand with our wan smiles for the camera, vowing to be a warrior, a soldier, or whatever. We tell each other that “I may have Parkinson’s, but Parkinson’s does not have me”.
Oh but it does. It so does.
Each year, World Parkinson’s Day reminds us that it still exists. It reminds us that billions of dollars have been spent on research. It reminds us that billions more dollars are still needed. It reminds us that, since World Parkinson’s Day last year, thousands have been told that they have Parkinson’s. And tens of thousands no longer have Parkinson’s. Because they’re dead.
Last year, Parkinson’s was an incurable disease. This year, Parkinson’s is an incurable disease. And let’s recognise the fact that until that day when we win, we lose. Every day, we lose a little bit more.
And every year, on 11 April, we remind the world that we haven’t gone away. Which is of course a nonsense. Because many of us have. The condition itself certainly hasn’t gone away. Each year, on this one day, we draw the public’s attention to this condition and the need for more treatments, better treatments and even perhaps that final treatment we all dream about.
That’s the difference between people with Parkinson’s and the rest of the world. You are only reminded once a year. We are reminded – and boy are we reminded – for the whole year. So, no I will not be celebrating World Parkinson’s Day. I would just like one day every year – is that too much to ask – when I don’t have to think about this condition.
One day we will beat this thing. In the face of everything, it is hard to keep saying that. But it’s true and I believe it now as much as I ever have. And when that day comes, when we are finally delivered from this hateful condition, I will dance on its grave.
Then, and only then, will I celebrate World Parkinson’s Day.
PS: If you want to bring that day closer, please feel free to donate to The Cure Parkinson’s Trust